ACT UP and the AIDS Crisis: Key Concepts and Historical Context

Let the Record Show by Sarah Schulman

  • Synthesizes lessons from ACT UP oral history project.
  • Oral histories are videotaped and accessible online. Website: ACT UP Oral History Project.

United in Anger

  • A film by Jim Hubbard, drawing on video footage from ACT UP.
  • Includes footage from DIVAS (acronym not specified in the transcript).

Key Figures

  • Sarah Schulman:
    • Novelist, poet, journalist, and historian of ACT UP.
    • Former member of the Committee for Abortion Rights and Against Sterilization Abuse (CARASA).
    • Jewish anti-Zionist. Writes about Israel/Palestine, family homophobia, and theater.
    • Teacher at the College of Staten Island.
  • Jim Hubbard:
    • Filmmaker, focusing on dance and HIV/AIDS.
    • Co-founded New York Queer Experimental Film Festival with Sarah Schulman.
    • Filmed interviews for the ACT UP oral history project.

Understanding HIV/AIDS

  • HIV (Human Immunodeficiency Virus):

    • Attacks the immune system, making the body vulnerable to other illnesses.
    • Does not directly cause illness but weakens the immune system.
    • Increases susceptibility to common viruses and unusual infections like PCP pneumonia (Pneumocystis carinii pneumonia) and Kaposi sarcoma.
    • Kaposi sarcoma: rare cancer causing lesions (red spots), often on the face.
    • Destroys CD4 white blood cells.

  • Progression to AIDS:

    • With good healthcare and medication, HIV infection does not necessarily lead to AIDS.
    • Medications suppress the virus.

  • Transmission:

    • Transmitted through blood, semen, vaginal fluids, and breast milk.
    • Not transmitted through spit, saliva, urine, feces, or sweat.
    • Not transmitted through casual contact.

  • Early Understanding of Transmission:

    • Gay Men's Health Crisis in New York played a crucial role in mapping HIV transmission.
    • Initially, the public health establishment was largely uninterested due to the affected populations (gay men, drug users, impoverished people).

  • Contrast with COVID-19 Response:

    • The response to SARS CoV-2 was much quicker and more serious compared to the initial response to HIV/AIDS.
    • Rapid development of vaccines and treatments for COVID-19, unlike the slow response to HIV/AIDS.

  • Early Misconceptions:

    • Initially believed to be a disease affecting those receiving semen (bottoms) during sex.
    • Later linked to blood transfusions in hemophiliacs.
    • Widespread fear of transmission through casual contact (touching, sharing toilet seats, mosquito bites).

  • Current Understanding and Treatment:

    • HIV is now considered a chronic, manageable disease with proper treatment.
    • Most people with good healthcare take one pill daily to achieve an undetectable viral load.
    • USAID provided medication to people with AIDS, including pregnant individuals, to reduce transmission.

  • Impact of Defunding Programs:

    • Removal of USAID funds and the Global Fund for HIV/AIDS has led to new HIV infections that could have been prevented.
    • Even before defunding, access to HIV medication was limited in many parts of the world, including within the US for poor populations.

  • Life Expectancy:

    • People with HIV on antiretroviral treatment are expected to live long, healthy lives with normal life spans.

  • U=U Campaign (Undetectable = Untransmittable):

    • An undetectable viral load means the virus is not transmittable, even with unprotected sex.

Preventing HIV Infection

  • Barrier Methods:

    • Condoms and other barrier methods are effective in preventing HIV transmission.
    • Use water-based or silicone-based lubricant to prevent condom breakage.
    • Avoid oil-based lubricants like Vaseline, which can damage condoms.

  • Treatment as Prevention:

    • People on antiretrovirals with an undetectable viral load do not transmit HIV.

  • PrEP (Pre-Exposure Prophylaxis):

    • Daily medication for HIV-negative individuals to prevent infection, especially those at high risk.
    • Not to be taken by HIV-positive individuals.

  • PEP (Post-Exposure Prophylaxis):

    • Emergency medication taken after potential HIV exposure (e.g., condom breakage) to prevent infection.

  • Access to PrEP:

    • PrEP and associated blood work should be free to anyone who needs it.

  • Clean Needles and Syringes:

    • Prevent HIV transmission among drug users who share needles.
    • Needle exchange programs (providing clean needles for used ones) are effective but controversial.

Structural Issues and Public Health

  • Eliminating HIV Transmission:

    • With regular mass testing and treatment, an HIV-free generation is possible.

  • Barriers to Testing and Treatment:

    • Lack of health insurance.
    • Limited access to testing sites.
    • Homelessness and eviction.
    • Forced migration.
    • Drug use without treatment.
    • Incarceration.
    • Discrimination in the healthcare system.

  • Political and Economic Factors:

    • Republican efforts to halt Medicaid expansion may negatively impact healthcare access for vulnerable populations.
    • Defunding of Planned Parenthood in Indiana led to an increase in HIV rates due to the loss of free testing and treatment.

ACT UP's Impact

  • Political Victories:

    • Despite facing marginalization, ACT UP achieved significant political victories, including increased gay acceptance and improved healthcare access.
    • ACT UP's work paved the way for conversations about universal healthcare.

  • Current Concerns:

    • Resurgence of anti-trans activism and potential for anti-gay activism.

Historical Context: The Emergence of AIDS

  • Early Recognition:
    • 1981: AIDS recognized as a new diagnosis.
    • Initial cases among gay men in New York, San Francisco, and Los Angeles with rare cancers like Kaposi sarcoma.
    • Initially called